Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 One of the things that gets joked about alot is how Dr. G needs to clone himself. Right now, the parents group MAT is working very hard to raise the funds for the trials. They are working on setting up the drawing stations to start on the immune profiling study. The goal is to get better treatments for our children, ones that will hopefully make things alot easier. At this point we have to address each area that is affecting our child, diet, any background viral activity,infections, etc. Its a step by step process, but its definitely worth doing. My son has come so far, but will his immune system completely normalize without better treatments, I can't say. All I do know is that his autoimmune/viral problem has to be improving, since his symptoms are almost gone. Hopefully as things progress Dr G. will be able to do the things he has talked about, get a foundation set up, get other doctors trained, etc. so that lack of insurance or access to doctors, will not keep any child from being helped. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 Cheryl or others, Would you mind sharing some of the things you have done for your son to try to improve his immune system? I am assuming that when you talk about his autoimmune problem, you are referring to specific immune issues that have been revealed through testing. We just got my sons tests back which showed a low number of " lymmpokytes " (I don't know how to spell) and an elevated " killer cell levels " . I don't know if I'm calling these by the right names, my learning curve is very large. Basically, his immune system showed low levels in some areas and hyper levels in others. There is a lot of talk lately from people talking about the " immune " problem, but I don't know how many have actually had it confirmed. Which is why I'm curious as to how you feel you have impacted your childs immune system for the better. BTW, my son also came back with LOW white blood cell count. This is the seconded time it has been tested. It seems to me that it must tie together somehow, have you expierenced the same thing? Kelli >From: 1raptor@... > >One of the things that gets joked about alot is how Dr. G needs to clone >himself. Right now, the parents group MAT is working very hard to raise >the funds for the trials. They are working on setting up the drawing >stations to start on the immune profiling study. The goal is to get better >treatments for our children, ones that will hopefully make things alot >easier. At this point we have to address each area that is affecting our >child, diet, any background viral activity,infections, etc. Its a step by >step process, but its definitely worth doing. My son has come so far, but >will his immune system completely normalize without better treatments, I >can't say. All I do know is that his autoimmune/viral problem has to be >improving, since his symptoms are almost gone. Hopefully as things progress >Dr G. will be able to do the things he has talked about, get a foundation >set up, get other doctors trained, etc. so that lack of insurance or access >to doctors, will not keep any child from being helped. >Cheryl > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 I have a question about the immune tests. Those who have had their children tested do you think they are generally in poor health? Or are you having them tested because of the autism/immune theories? My son had rashes and yeast infections as a baby, but since turning 2 he has been so healthy. He is the last to catch a cold or flu and seems to recover the quickest. I am just curious if your children are showing uneven levels in their testing, yet appear healthy. steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 In a message dated 9/3/99 7:01:25 AM Pacific Daylight Time, A1a2ana3@... writes: << I am just curious if your children are showing uneven levels in their testing, yet appear healthy. steph >> Steph, took the same route as your child.. sick until a certain age.(2) then not at all.. CDSA showed a +4 candida. Organic acid testing showed elevations in most catagories. Hair analysis showed elevations in 3 metals, plus deficiencies in most minerals. Parasites, as well. So, looks are decieving. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 All three of my children are but are never sick---the nids affects the way they THINK and ACT Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 The children have the same type of abnormalities as the adults with CFIDS. As with the adults, there are different patterns of illness. Some are sick all the time and others hardly ever get sick. It depends on what parts of the immune system are off. From the testing that was done on my son, he has some parts that are overactive and some parts that are low. He also was starting to show antibodies against his thyroid, which from some of the things I have read occur in about 20% of adults with CFIDS. There are also other types of autoantibodies that are being found. It is not the same from person to person. My son also has things off that indicate a problem with yeast/virus. We are treating him based on the results of his bloodwork.(anti-virals, anti-fungals,diet,etc.) He also had a NeuroSPECT scan which shows the bloodflow is shutting down in certain areas of the brain, which is consistant with what they are finding in these children and adults. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 1999 Report Share Posted September 3, 1999 for me I have always thought there was an immune problem. as a baby we had one ear infection after another....tubes...in the winter it seemed like he would get one cold and it would hang on all winter. Plus he did things like run a fever for what seem to reason. a few hours later it would be gone. that is the reason I had him tested and sure enough he does have an immune problem. low in IGG, IGA etc. We will be starating IVIG here in a few weeks. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Please remove me from the list. At 03:14 PM 9/2/99 -0000, you wrote: >From: 1raptor@... > >One of the things that gets joked about alot is how Dr. G needs to clone >himself. Right now, the parents group MAT is working very hard to raise >the funds for the trials. They are working on setting up the drawing >stations to start on the immune profiling study. The goal is to get better >treatments for our children, ones that will hopefully make things alot >easier. At this point we have to address each area that is affecting our >child, diet, any background viral activity,infections, etc. Its a step by >step process, but its definitely worth doing. My son has come so far, but >will his immune system completely normalize without better treatments, I >can't say. All I do know is that his autoimmune/viral problem has to be >improving, since his symptoms are almost gone. Hopefully as things progress >Dr G. will be able to do the things he has talked about, get a foundation >set up, get other doctors trained, etc. so that lack of insurance or access >to doctors, will not keep any child from being helped. >Cheryl > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 I'm a little confused, did I say something offensive? If I did that was not my intention. Just stating my opinion. <From: Toft <rktoft@...> <Please remove me from the list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 I may be off, but it was my impression that just responded to your email to get the return address to end his subscription---I dont think it was in response to what you wrote Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 1999 Report Share Posted September 23, 1999 You know, it is such a weight off my shoulders to read that others have the same thought I had since 1983. My Spencer had chronic ear infections, 3 sets of tubes, chronic loose stools, sinus infections and then, tah dah, a diagnosis of pervasive developmental disorder. I kept hounding the pediatrician that I KNEW my boy was sick, and the fact that all the 'experts' called it a psychiatric disorder made ME crazy. The good news - he has an IQ of 140, is mainstreamed in Kindergarten, and is seeing a neuroimmunologist to work on the infections. Interestingly, one of the questions we were asked was if anyone in our family had MS or Alzheimer's - and both diseases are in our family. We are waiting on the blood work right now. I don't feel alone anymore - it was such a long period of wondering why no one else could see that his illnesses were hampering his development. Thank you, whoever it was who did it, for creating this list!! Re: Re:Diet/Dr. G. etc. From: Bounds <mbounds@...> In response to Alana2ana: The progress of thought for us was: This child is sick all the time. (ear infections, frequent colds, sinus congestion, more frequent than normal diahrrea). He has developmental delays. Was introduced to the autoimmune theory and thought the two might be a connected. The blood tests were part of a first visit work up with Dr. Goldberg. We didn't make the connections on our own but rather found the theory, given our own observations, compelling. One point I want to address in your post however. The point about the immune system is not necessarily that it is " weak " ; that is that your child gets sick all the time. The theory is that it is " disregulated " which can mean that your child's immune system is on overdrive as well. I know of another parent with a child who is affected who sounds like yours. His child has the immune system of of a shark. He rarely gets sick and when he does, colds that take most people days to get over he gets over in a 1/2 hour. Dr. Galpin's explanation of immune system disregulation at the conference was excellent. You might try to get a copy of that if you are so inclined. Hope this helps. Bounds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 In response to Alana2ana: The progress of thought for us was: This child is sick all the time. (ear infections, frequent colds, sinus congestion, more frequent than normal diahrrea). He has developmental delays. Was introduced to the autoimmune theory and thought the two might be a connected. The blood tests were part of a first visit work up with Dr. Goldberg. We didn't make the connections on our own but rather found the theory, given our own observations, compelling. One point I want to address in your post however. The point about the immune system is not necessarily that it is " weak " ; that is that your child gets sick all the time. The theory is that it is " disregulated " which can mean that your child's immune system is on overdrive as well. I know of another parent with a child who is affected who sounds like yours. His child has the immune system of of a shark. He rarely gets sick and when he does, colds that take most people days to get over he gets over in a 1/2 hour. Dr. Galpin's explanation of immune system disregulation at the conference was excellent. You might try to get a copy of that if you are so inclined. Hope this helps. Bounds Quote Link to comment Share on other sites More sharing options...
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